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Background As social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG. Patients and methods We performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life. Results We analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p  < 0.001), had higher education levels (47 vs. 21%; p  < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p  < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p  < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p  < 0.001). Conclusions Both modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making. Implications for cancer survivors Older patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress. Trial registration www.germanctr.de , number DRKS00005086

Background Loneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated. Objective This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease’s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases. Methods We determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods. Results 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. 69% are private groups. Group type, size, activity (sum of posts, comments, and reactions calculated by Facebook), new memberships, and language varied largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3606). The highest percentage of awareness and information groups was found for teratogenic diseases (18/68, 26%). The odds of finding a Facebook group increased according to the level of information available about the disease: known prevalence (odds ratio [OR] 3.98, 95% CI 3.39-4.66, P<.001), known disease type (OR 3.15, 95% CI 2.70-3.68, P<.001), and known inheritance mode (OR 2.06, 95% CI 1.68-2.52, P<.001) were all associated with higher odds of finding a Facebook group, as was dominant compared to nondominant inheritance (OR 2.05, 95% CI 1.74-3.42, P<.001). The number of groups per disease increased with higher prevalence. Conclusions Facebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants’ need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members.

The purpose of this study was to interview parents of children with severe or profound intellectual and developmental disabilities to determine the perceived value of support groups and identify recommendations for support group design based on their experiences and feedback. Despite varied experiences with support groups, most parents indicated the value of support groups is in providing a place where parents can feel understood and both share and gather information. Parents recommended support groups be targeted for parents of children with similar disabilities and needs, have flexible structures and qualified leaders, and offer a wide variety of content in various formats. Given parental recommendations for support group design varied, summary recommendations addressing a wide range of preferences are provided.

All across America, angry fathers are demanding rights. These men claim that since the breakdown of their own families, they have been deprived of access to their children. Joining together to form fathers' rights groups, the mostly white, middle-class men meet in small venues to speak their minds about the state of the American family and, more specifically, to talk about the problems they personally face, for which they blame current child support and child custody policies. Dissatisfied with these systems, fathers' rights groups advocate on behalf of legal reforms that will lower their child support payments and help them obtain automatic joint custody of their children. InDefiant Dads, Jocelyn Elise Crowley offers a balanced examination of these groups in order to understand why they object to the current child support and child custody systems; what their political agenda, if enacted, would mean for their members' children or children's mothers; and how well they deal with their members' interpersonal issues concerning their ex-partners and their role as parents. Based on interviews with more than 150 fathers' rights group leaders and members, as well as close observation of group meetings and analysis of their rhetoric and advocacy literature, this important book is the first extensive, in-depth account of the emergence of fathers' rights groups in the United States. A nuanced and timely look at an emerging social movement,Defiant Dadsis a revealing investigation into the changing dynamics of both the American family and gender relations in American society.

Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers' mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.

The trend towards the use of the Internet for health information purposes is rising. Utilization of various forms of social media has been a key interest in consumer health informatics (CHI). To reveal the information needs of autism-affected users, this study centers on the research of users' interactions and information sharing within autism communities on social media. It aims to understand how autism-affected users utilize support groups on Facebook by applying natural language process (NLP) techniques to unstructured health data in social media. An interactive visualization method (pyLDAvis) was employed to evaluate produced models and visualize the inter-topic distance maps. The revealed topics (e.g., parenting, education, behavior traits) identify issues that individuals with autism were concerned about on a daily basis and how they addressed such concerns in the form of group communication. In addition to general social support, disease-specific information, collective coping strategies, and emotional support were provided as well by group members based on similar personal experiences. This study concluded that Latent Dirichlet Allocation (LDA) is feasible and appropriated to derive topics (focus) from messages posted to the autism support groups on Facebook. The revealed topics help healthcare professionals (content providers) understand autism from users' perspectives and provide better patient communications.

Adolescence and early adulthood are critical periods for the development of mental disorders. Online peer-to-peer communication is popular among young people and may improve mental health by providing social support. Previous systematic reviews have targeted Internet support groups for adults with mental health problems, including depression. However, there have been no systematic reviews examining the effectiveness of online peer-to-peer support in improving the mental health of adolescents and young adults. The aim of this review was to systematically identify available evidence for the effectiveness of online peer-to peer support for young people with mental health problems. The PubMed, PsycInfo, and Cochrane databases were searched using keywords and Medical Subject Headings (MeSH) terms. Retrieved abstracts (n=3934) were double screened and coded. Studies were included if they (1) investigated an online peer-to-peer interaction, (2) the interaction discussed topics related to mental health, (3) the age range of the sample was between 12 to 25 years, and (4) the study evaluated the effectiveness of the peer-to-peer interaction. Six studies satisfied the inclusion criteria for the current review. The studies targeted a range of mental health problems including depression and anxiety (n=2), general psychological problems (n=1), eating disorders (n=1), and substance use (tobacco) (n=2). The majority of studies investigated Internet support groups (n=4), and the remaining studies focused on virtual reality chat sessions (n=2). In almost all studies (n=5), the peer support intervention was moderated by health professionals, researchers or consumers. Studies employed a range of study designs including randomized controlled trials (n=3), pre-post studies (n=2) and one randomized trial. Overall, two of the randomized controlled trials were associated with a significant positive outcome in comparison to the control group at post-intervention. In the remaining four studies, peer-to-peer support was not found to be effective. This systematic review identified an overall lack of high-quality studies examining online peer-to-peer support for young people. Given that peer support is frequently used as an adjunct to Internet interventions for a variety of mental health conditions, there is an urgent need to determine the effectiveness of peer support alone as an active intervention.

Aim To investigate the meaning of support groups and the features of these groups that African American (AA) women view as improving adherence to high blood pressure (HBP) treatment. The study generated a conceptual model to illuminate features of these groups that influence adherence of AA women to HBP treatment. Design Qualitative research. Methods Used focus groups and open‐ended questions to obtain the views of 26 eligible AA women, recruited from South Los Angeles. Line‐by‐line review and coding of interview transcripts were done. The feedback was used to specify a conceptual model depicting the meaning of support groups. The Consolidated Criteria for the Reporting of Qualitative Research guidelines were used. Results The conceptual model depicts the meaning of support groups as information giving/knowledge sharing, emotional or psychological support, instrumental support and coaching, and facilitators and barriers to joining support groups and factors for consideration in forming these groups.